Nobody knows the severity of pain until they have had actual spinal CORD surgery/pain. No other pain I have ever felt has been worse, except possibly the CSF leak headache after my last un-tethering.
People tell me all the time "I know so and so who has a bad back..." I stop them-interrupt and say I have a bad back and it's manageable, but it's the spinal CORD damage that is excruciating.They don't listen. They keep on talking telling me how a chiropractor helped them, or exercise, meditation, etc. If I said I had brain damage they might take it as serious as it is, but they do not understand that the spinal cord comes straight from the brain. A tethered cord surgery is as serious and as risky as brain surgery. Not exactly the same as having a laminectomy and a fusion (and I have had that too) from a herniated disk. There is no way to describe the pain to someone who hasn't experienced it. No way...there are no words to describe what it feels like to have your spinal cord cut.
I came out walking after both of my tethered cord surgeries, BUT after each surgery more and more is taken away from me and more pain than a person should have to bear every day of my life. Arachnoiditis is a very real threat to someone whose dura has been ruptured or cut. I came out walking but I will not always be walking even though I have endured four horrid surgeries. I sometimes wish I could go back and learn to accept a chair and live with much less pain.
Think long and hard before you allow that or any epidural steroid shots into your spinal canal which also punctures your dura and can cause arachnoiditis. Every surgery you have creates more scar tissue and more tethering. It's unending.
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Originally Posted by dorkthecat
i I FEEL YOUR PAIN. I HERNIATED A DISK 3 YEARS SHOVELING SNOW. THREE DAYS LATER I WENT NUMB FROM THE WAIST DOWN. I ENDED UP IN THE HOSPITAL FOR A FEW DAYS. WHEN I CAME HOME WITH THE ASSISTANCE OF A WALKER AND MY HUSBAND, I WAS ABLE TO GET AROUND A LITTLE. I SLEPT ON THE COUCH FOR 3 MONTHS LIVING ON GABAPENTIN AND TRAMADOL. THIS OF COURSE HAS TAKEN AWAY ALL RELATIONS WITH MY HUSBAND. WE RARELY EVEN SLEEP TOGETHER. I WASN'T DIAGNOSED WITH A TETHERED SPINE FOR A YEAR. MY LEGS ARE EXTREMELY SENSITIVE, AS ARE MY FEET. THEY BECOME VERY COLD AND TINGLE. I AM STILL NUMB FROM THE WAIST DOWN ALTHO ABLE TO WALK UNTIL I CAN'T TAKE THE BACK AND LEGS ACHING SO BAD. I HAVE TO REST MY LEGS AND I'M TIRED MOST OF THE TIME. I HAD A SMALL LOOKING TYPE RASH ON MY LOWER LEFT SIDE OF MY BACK AFTER THIS HAPPENED, BUT NOW IT IS HUGE WITH BIG PURPLE BLOTCHES. WHEN I WAS FIRST SEEN BY THE MD THAT DIAGNOSED ME, HE SAID THIS WAS A CLASSIC SIGN OF A TETHERED SPINE. DO YOU HAVE ANY MARKING ON YOUR BACK? MY GENERAL MD ASVISED NOT TO HAVE SURGEY AS HE HAS A PATIENT THAT DID HAVE THE SURGERY AND IS NOW A FULL PARAPALEGIC AND IN A NURSING HOME. I GET SO TIRED OF HEARING :I KNOW HOW YOU FEEL" WHEN UNLESS YOU HAVE THE CONDITION, THEY HAVE NO IDEA. I HOPE TO SEE A RESPONSE AND WISH YOU THE BEST DEBRA,,SINCERELY, KATE
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